Chapter 3

One suggestion I received from a friend who read this story so far was to tell readers what kind of schooling and extra-curricular activities Shawna participated in as she was growing up.
Shawna attended special education classes in the local public schools until she “graduated” at the mandatory age of 22. These were not regular academic classes in the traditional sense, but were structured more to the individual capabilities of each student. Under California law, her educational goals and objectives were monitored by an annual review called an Individual Education Plan, or an “IEP”. She participated in normal school activities, such as school plays, field trips, and Girl Scouts.
She attended a summer camp for physically-challenged kids every year, which included swimming, boating, horseback riding and singing around the campfire. She also participated in a special-needs dance class that put on a fantastic recital at the end of the year. It was for one of these recitals that she got her first formal gown. Shopping for that gown is one of our dearest mother-daughter memories. (Another reminder that I wasn’t missing out on anything).
Shawna was also very active in Special Olympics while growing up, and still is. Despite her right-sided paralysis, she used to love track and field, specializing in the 50 and 100-yard races. However, as she got taller and osteoporosis developed in her twenties, the risk of falling became more of an issue, so we phased out track and field and replaced it with softball, gymnastics and bowling to name a few. (Our concern about bone safety was validated at age 27 when she took a relatively minor spill and fractured her weaker right leg, requiring extensive orthopedic surgery). One of her favorite activities at Mountain Shadows Community Homes was the annual snow-ski trip. This was an amazing skiing excursion for disabled individuals who got to sit in a specially designed ski chair while a trained ski professional held on to it while skiing down a slope. Wow, what a ride! Shawna has always been a dare devil, so this was one of her favorite adventures.
Today, as an adult, Shawna enjoys an adaptive horseback riding class called Ride & Shine. When she first started Ride & Shine, she could not balance her torso very well on the horse, due to the right-sided paralysis. It took a number of lessons given with one-on-one attention to master this. The class also teaches the riders how to care for a horse, including brushing, feeding, walking and giving the horse verbal instructions. Now she is quite competent at riding, an accomplishment that has improved her core upper body strength and has given her a huge measure of self-confidence.
Many people who meet Shawna for the first time, then learn that she lives in her own apartment, wonder how this works. After 8 years at Mountain Shadows Community Homes, by the age of 30 Shawna was ready for the next step in her quest for independence. She had learned about “Supported Living” from some of her friends at her day program (a sort of sheltered workshop), and informed me one day that it was her intention to move into Supported Living – meaning she wanted to get her own apartment.
My reaction to this announcement was, “Uh…well, let’s talk about that another time, okay?”. I could not fathom how in the world that would work! At Mountain Shadows there was dozens of trained staff, including nurses and activity coordinators that made sure Shawna’s daily needs were met and that she had an active social life. I could not imagine how this level of support could be carried out if she lived in an apartment by herself with paid attendants. Who would be in charge of the attendants? Me?? Would I have to hire and train her staff myself?? What if someone stole from her or took advantage of her in some way? No, I concluded, she was not going to live in her own apartment, that was not possible.
About this same time (late 2004) my husband Bob was offered early retirement and we decided to leave the San Diego area and move to the Sierra Nevada mountains in northern California. We both loved the mountains and pine forest, and decided this was where we wanted to spend our retirement years. Of course, that meant Shawna had to move too. Because she was ready to leave Mountain Shadows anyway, she welcomed the prospect of moving to northern California with us. She saw this as the perfect segway to attain her goal of living in her own apartment.
Fortunately, I was able to convince her that the first step was to get her into a new group home at our destination, and from there we would start working on Supported Living. In reality, I was stalling, still unconvinced how this Supported Living thing would work.
Reality hit hard, however, when I soon realized that the group homes in the area we chose to live were not near the quality we were used to at Mountain Shadows. We tried two different group homes in the first year, both eventually becoming unsatisfactory in one way or another. This was a very difficult time for both Shawna and me. She was unhappy, and if Shawna is not happy, I am not happy.
In California there is a non-profit government-funded agency called Regional Center that provides and coordinates services and supports for individuals with developmental disabilities. They have offices throughout California to provide a local resource to help find and access the many services available to disabled individuals and their families. This was one of the reasons Bob and I decided to stay in California after retirement. We could have gotten a lot more for our retirement dollar by moving to a less expensive state like Nevada or Arizona, but we were afraid there would not be the level of services for Shawna in these states that we had come to depend on in California.
With Shawna continuing her relentless campaign for her own apartment and the group homes available being a disappointment, I finally contacted our local Regional Center office in late 2005 to learn more about this thing called Supported Living.
I learned that the guiding principle behind Supported Living Services (“SLS”) in California was to give the disabled individual the opportunity to have what the rest of us take for granted – the right to live in our own home and exercise meaningful control over our lives. SLS includes assistance in selecting and moving into a home within the individual’s budget (typically an apartment), choosing personal attendants, acquiring household furnishings, and becoming a participating member in community life.
There were several agencies in our area that provided SLS services, we learned. All Shawna and I had to do was choose one, and Regional Center would fund them to provide all of the support we needed to make the transition from group home to Shawna’s own apartment.
We found a a nice two-bedroom apartment about 20 minutes from where Bob and I lived. It was handicapped accessible and on the ground floor, with a big sunny kitchen. I was surprised to learn that half of the rent would be paid by the SLS agency we chose, because their staff would occupy the 2nd bedroom.
While we were apartment hunting the SLS agency was assembling Shawna’s potential staff, which would be with her 24/7, one-on-one. Not all SLS clients require 24/7 staffing, some only need part-time assistance, but Shawna definitely needed full time help. The SLS agency would train and supervise the staff on a daily basis. Shawna got to interview every pre-screened candidate and personally approve who she wanted to hire. If she did not like an individual for some reason, they would not be hired to work in her home. Also, it was explained to us that after working with a person for a while, if Shawna decided it wasn’t working out, she could just call the agency and they would immediately replace that staff person with another one of her choosing.
Bob and I were excited, and purchased an apartment full of furniture, including dishes, linens, a television set and all the other things needed to set up a new household - the same thing many parents do for their normal child just starting out. (Again, I wasn’t missing out).
Shawna’s portion of the rent would come out of her monthly SSI check, which included additional funds provided by the state of California. Previously, 100% of Shawna’s monthly SSI check went directly to the group home. But with SLS, Shawna’s check goes into her own checking account, on which I am a signer, and I write the checks for her portion of the rent, utilities and other household expenses, and she has sufficient funds left over for food shopping and recreational spending, such as Ride & Shine. She may not have money to burn, but it’s enough. It makes me wonder what the group homes were doing with all of that money when they were the payee.
Shawna moved into her new apartment on March 1, 2006. The only regret I have is that I waited so long to let this happen.